Does Minnesota have an adult Down syndrome clinic? It’s a common question in our community with a tough answer of ‘no’. Here at DSAMn, we get it. Navigating medical needs and concerns for adults with Down syndrome can be especially hard without direct access to a specialty clinic. Family Connectors often work through this challenge by connecting families to resources that we’ve found helpful in bridging the current gap. Here are some of our go-to resources:
Down Syndrome Clinic to You (DSC2U)- Dr. Skotko
DSC2U is a personalized care plan option created by Dr. Skotko, a leader in Down syndrome care and research, and teams at Massachusetts General Hospital. It is an online platform that asks caregivers to provide information about current symptoms and past medical history for the person with Down syndrome. Other questions cover nutrition, therapies, life skills and community resources. After information is submitted, caregivers receive two personalized documents- one for the caregiver and one for the primary healthcare provider. These documents provide customized suggestions that help guide conversations with providers and access care. Learn more here: https://www.dsc2u.org/
*DSAMn offers a scholarship for one time use of DSC2U for families who qualify due to financial needs. Email ashley@dsamn.org with any questions.
Adult Down Syndrome Clinic Resource Library- Dr. Chicoine
The Adult Down Syndrome Center has an extensive online resource library that provides information on health and wellness for adolescents and adults with Down syndrome, their caregivers, and health care professionals. Many of the resources are authored by Dr. Chicoine, the medical director of the Adult Down Syndrome Center in Illinois, and other leading experts in the field. We often refer families to the resource library as they work through medical and mental health concerns for their loved one. Families have found the library resource to be helpful in caring for teens and adults with Down syndrome within home and community settings, as well as managing care needs in partnership with providers. Learn more here: https://adscresources.advocatehealth.com/resources/
GLOBAL Medical Care Guidelines for Adults with Down Syndrome
In 2020, the Global Down Syndrome Foundation released medical guidelines for adults with Down syndrome. The GLOBAL Adult Guideline is an important tool that provides evidence-based medical recommendations to support caregivers and providers in their care of adults with Down syndrome. A full version of the guideline is available on GLOBAL’s website for providers, as well as a family-friendly version. A checklist format is also available. We often encourage families to bring the checklist to primary care provider appointments and share with other medical professionals as needed. We’ve found that the checklist helps guide conversations, evaluations and access more thorough care. Find guideline resources here: https://www.globaldownsyndrome.org/medical-care-guidelines-for-adults/
Gillette's Complex Care Clinic and Transition Services
The Complex Care Clinic at Gillette serves children and young adults who have complex medical health needs, including Down syndrome. The Complex Care Clinic typically serves patients ages 0-26, but with approval, older patients are seen as well. This clinic is not a primary care clinic but instead provides care management. Within these services, they provide a Transition Clinic that helps patients connect with adult primary care providers and specialists. Leading this effort is Dr. Bahr, a Med-Peds provider who has worked with many patients who have Down syndrome. She is passionate about transition services and helping families connect with appropriate providers for their loved ones.
Learn more about the Complex Care Clinic here: https://www.gillettechildrens.org/conditions-care/complex-care
Learn more about the Transition Clinic here: https://www.gillettechildrens.org/transition-services
Med-Peds Providers
We’ve worked with a handful of families who have had success connecting with a Med-Peds provider for primary care. Med-Peds providers have two specialities that include pediatrics and internal medicine (ICU level of care). These specialties equip them to navigate complex medical needs and many of these providers can see patients through adulthood. U of M Fairview and Health Partners-Park Nicollet both have extensive lists of Med-Peds providers. This might be an option to explore when searching for primary care for your adult with Down syndrome.
Putting together medical care for adults with Down syndrome can be a puzzle. It often involves networking with other families in the community, connecting with multiple resources, trial and error, and perseverance. Ultimately, it’s important to connect with providers who are interested in and willing to learn about the unique needs of your loved one. Family Connectors are here to help explore resources with you and make referrals. Connect with a Family Connector today!
Connect with a Family Connector:
Call: 651-603-0720 option 2
Email: connect@dsamn.org
Click here to complete Family Connector support request form
